I am soon to be 60 years old and the caregiver for my father with dementia. I am getting to the point that I am not sure how much longer I can care for him. He continues to get worse and I am feeling so overwhelmed. He is the most modest man I know, I've never even seen him wear shorts. This morning he hobbles into the living room with no pants or underwear on! His behavior is deteriorating quite rapidly. He has no house, savings, retirement, etc. His only source of income is his social security check. Apparently his check is larger than average, large enough that he cannot qualify for medicaid, yet small enough that he cannot come anywhere close to paying for a nursing home. I have called social services for help and have gotten nothing more than kind words. He can barely walk and falls on a regular basis. He outweighs me by a hundred pounds. I am having a terrible time getting him in the shower. His memory is shot. He wanders at night. There are so many issues I would have to write a novel.
I am being told by Social Services that he cannot go to a nursing home because Medicare only covers short term stay after a hospitalization, he makes to much in Social Security to qualify for Medicaid, and we are expected to pay about $7000/month out of pocket. Between my retirement check, Dad's SS check and my husbands paycheck we don't even make that much a month! Not even close! I've asked them "What will I do when he can no longer walk at all, carry him around?" And they answer "Well, you just do the best you can" That's not an answer!! They tell me we can hire home health care to come in for a few hours a day to help. That's fine except for the fact he is losing control of his bodily functions. I asked them what do I do if home health care workers come from 8-10 but he goes to the bathroom in his pants at 11? The same answer....just do the best you can.
Dad has been here for almost 2 years and I am virtually a prisoner in my own home. There just doesn't seem to be any answers that are affordable since he qualifies for nothing. I have 2 brothers and one sister. My sister helps about one weekend a month but she is still employed and can only occasionally give us an overnight reprieve. My brothers are both retired but yet are just so busy they can't find a minute of time to help. I feel like I am going to lose it one day and always seem to be on the verge of tears.
Seriously, I was secretly worrying that you might be like my cousin who has a bad habit of at least publicly, and I think even privately, idolizing her parents who were at best unsupportive and harsh, and at worst oppressive and abusive if half the things she's told me are true. They were horrible to her when she married a guy who quickly proved to be just a gold-digger (identity theft, ruined her credit in a matter of weeks) and had cheated on her ON THEIR HONEYMOON - they took his side and were against the divorce. And it makes her just depressed, turning anger inward on herself instead. Her mom was a little worse than mine in a few ways. And it is not just a matter of trying to remember the things they did well or the times they did provide or show kindness better than the other times, but she really writes things like "they were the most wonderful parents and human beings ever."
But I digress. Look, here's the thing. If you really do decide that you need to be the caretaker, do it and be proud and be positive. I hope there is some help and respite out there for you; people do quote a statistic of around 30% or more of caregivers dying before their loved ones...but hey that gives you a 70% chance of having a life after caregiving, think of it that way. However we choose to try to see that our parents have love and care, whatever mistakes we make or avoid, we need to find some joy and pride in it whenever we possibly can and take care of our selves while we are at it as best we can. Hugs!
I have a 13 year old daughter and I wondered how in the future I could tell her if she wore something inappropriate without sounding judgemental. Your story about your father is absolutely the best I have ever heard. I want my daughter to think the same way when she starts to date. Hopefully many, many years from now.
Thank you so much for sharing.